My name is Paul. I'm 55 years old and I want
to share with you why I feel very fortunate to have been one of
the first persons selected for the celecoxib chemoprevention study.
I had a my first colon cancer on September 30, 1994. Over the
past 4 and a half years I have continued to have other polyps
removed during regular endoscopic exams. I have now completed
a 1 year HNPCC study but I know that regularly scheduled endoscopic
exams will continue to be essential for my good health.
Just within my immediate family, my father and
one brother died from colon cancer and my other brother has colon
cancer as well. So HNPCC research has become very significant
in my life and I think it should be of paramount importance to
all of us who wish to help ourselves and possibly others. Except
for regular exams, it seems sometimes there isn't much we can
do to help ourselves. But through participation in the research
studies we may in some small way help others and ourselves. Being
a part of the celecoxib study has given me very powerful feelings
of hope and selflessness. That alone is reason enough for me to
participate.
Once I got past the anxiety brought on by the
language in the informed consent, the study went very smoothly
for me. Since I needed the endoscopic exams anyway, 4 pills a
day didn't seem so bad when considering the possible positive
results. I did experience mild diarrhea but no other significant
side effects. Initially, I couldn't see much of a downside to
the study since I could quit if I developed serious side effects,
and it has been a very positive experience for me overall. As
I expected, my doctors and the entire staff were always courteous,
professional and attentive.
However, during the past year, I have learned
that it is very important for everyone of us, and especially the
medical profession, to continue to pursue legislation that will
better protect the confidentiality of patients' records. Genetic
links to familial illnesses and conditions have been used against
some patients by their health insurance carriers. The existing
laws are inadequate and are not acceptable. Your medical records
and family history should be available to only your and to your
physician of choice. I urge you to talk to your doctor about this
and to contact your state and national legislators regarding this
matter. Finally, I believe that patient counseling could be improved
and I have addressed that issue with the nursing staff. Continuing
contact between professional caregivers and their patients can
be just as important as the support of family and friends.
Very good work is being done by researchers and
there is so much more to be done. May God bless them and their
work.
Paul